What do we know about ESSENTIAL TREMOR an... - Cure Parkinson's

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What do we know about ESSENTIAL TREMOR and can you have essential tremor but not PARKINSONS DISEASE?

Hikoi profile image
23 Replies

Parkinsons Disease (PD) and Essential tremor (ET) both come under the broad category of movement disorders but they are not the same. In both conditions you can have a tremor and both can have non motor symptoms so they are often confused. Essential tremor is at least eight times more common than Parkinson’s disease and as many as 50% of people with ET are diagnosed wrongly with Parkinsons or some other disorder. Not long ago they thought ET was just a tremor problem but now they have proved people can get non motor symptoms with Essential Tremor. Having non motor symptoms and essential temor does not mean you have Parkinsons, you still have essential tremor.

We do know that some people with ET will go on to develop PD so it is possible to have ET with PD but people with Essential Tremor DO NOT automatically have Parkinsons as well and having Essential Tremor is NOT the same as having Parkinsons Disease. There are many differences but these differences are not always recognized by healthcare professionals and misdiagnosis or wrong diagnosis is common.

Recently they have shown that ET has other non motor symptoms like Parkinsons does. This makes it even easier for us to confuse the two. ET non-motor symptoms, include cognitive problems, depression, anxiety, balance problems, hearing impairment, sleep problems and problems with sense of smell. Advancements in neuroimaging have revealed widespread alterations in the brain of people with Essential tremor.

So what are some of the differences?

There are different types of tremor. The tremor in ET It is an action tremor, that is it is brought on by action, doing things. It mostly presents on both sides of the body. The tremor can affect the hands, legs, head, and voice and generally is first noticed during middle age, but can occur at any time of life including in children. In some people ET remains mild throughout their life and does not result in significant problems; however, in others ET progresses and their tremor gets worse making many daily activities very difficult or impossible.

Recently I was at a café and the man having his meal at a table nearby was having such a job to bring his spoon to his mouth, he shock violently every time he did and the spoon banged so hard against his plate the whole cafe could hear the noise. I had to admire him for his perseverance. If you shake when you do things it also makes it difficult to do up buttons, write legibly and many other activities that require fine motor skills.

The tremor of PD almost always starts on one side and is in the arms and legs and the chin/jaw. In Parkinsons the main symptoms are bradykinesia, (slow movement) rigidity (stiffness), resting tremor, and gait/balance issues. The average age of onset of PD is 60 years (so later than ET) although it may be much later and only about 10 percent present before the age of 40 years. Doing up buttons and writing is difficult not so much because you shake but because of stiffness and slowness. In PD the writing gets very small and that is often a prediagnosis sign. In ET the writing may be very untidy due to the shake which is a different problem than the pd stiffness problem.

Both ET and PD are affected by stress, anxiety and emotion and both types of tremor increase under stress.

People dont get diagnosed with ET AND PD at the same time so if you were told you had ET you would not be told you also had PD. There are lots of overlaps and it is not easy to tell the difference sometimes but if you listen carefully to peoples description of their symptoms and you watch how they progresss or not over time you can eventually tell one from the other.

tremor.org.uk/2016-10-26-me...

eurekalert.org/pub_releases...

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Hikoi profile image
Hikoi
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23 Replies
Carpe_Diem profile image
Carpe_Diem

Evening from Dorset, UK. I was first diagnosed with ET in 2008 but it has become progressively worse of late and sadly it has brought a complete end to my secretarial career (legal and medical - ironic or what) of > 45 years. I saw the same Consultant as 2008 on the 22/02, my GP has tried me on Propranolol - no discernible affect at all and I am now on a low dose of Topiramate (25mg nocte) which is about to be increased to see how it is tolerated, I would say there is a VERY mild improvement. Personally speaking, I don't like the sound of Gabapentin or Primadone but never say never. One thing I do know is there is absolutely NO WAY I would consider DBS. Do you have any views about medicinal cannabis? I have also been seen by ENT and my larynx is totally free of nodules but there is some evidence of dysphonia, further investigation due 5/4. My balance is totally grim always falling over and touch wood, (head) have escaped any breaks and sprains apart from some minor bruising. Notwithstanding all of this c..p I am still a glass half full girl, girl being a definite figure of speech lol. BTW PD definitely ruled out.

Hikoi profile image
Hikoi in reply to Carpe_Diem

Thankyou thats most interesting. I havent researched cannabis and ET but for some people cannabis helps tremors. I dont know alot about ET as i have PD and most people on here do or are some how connected with Parkinsons. I came across an interesting UK site, it may have more info.

tremor.org.uk/news.html

And now i must away to 'seize the day,'

Carpe_Diem profile image
Carpe_Diem in reply to Hikoi

Those links were great thank v much that site has changed significantly over the years

Juliegrace profile image
Juliegrace in reply to Carpe_Diem

You should look into focused ultrasound. It's been approved as a treatment for ET in Israel, the US and elsewhere. Not sure about the U.K. Go to fusfoundation.org.

Hikoi profile image
Hikoi in reply to Juliegrace

Thanks for that info Juliegrace, i knew about focussed ultrasound as research but exciting to see its now available in some places - sadly not for PD yet.

UK info

insightec.com/us/news-event...

Juliegrace profile image
Juliegrace in reply to Hikoi

I am participant #5 in the study for PD dyskinesia at the U of Maryland, Baltimore. The project mgr told me that they are expanding the PD study. Maybe they'll start a site in the U.K.

Hikoi profile image
Hikoi in reply to Juliegrace

Wow thats exciting.

It seems that so far only a few conditions have been approved by the FDA. I like the focus of the org, to speed the process up. From what i read they are still working out which areas to target for PD.

UK will have its own approval process, tho i dont live there.

Hikoi profile image
Hikoi in reply to Juliegrace

PS would be really interested in how it goes for you. I think this treatment has great potential, hope it doesnt take too many years to be widely available

Juliegrace profile image
Juliegrace in reply to Hikoi

Sorry it took me so long to reply. I do most of my reading on an iPad which is not so great for typing.

I had moderate success with the procedure, most of it short-term. I am in touch with three other participants who seem to have responded better than I did. although the first patient, Kimberly Spletter, has had the best and most sustained response. She is the person in the videos on the foundation's website. As I wrote in one of the replies above, they are expanding the PD study since the results have not been as consistent as they had hoped.

Jenzo profile image
Jenzo

Good information. I was diagnosed with ET early on at around 42 but started having the tremor in one hand only around 40. I then started having gait problems. I now have a Parkinson's diagnosis at 46. While the tremor never really progressed other PD symptoms manifested themselves. I think what confirms a diagnosis of PD for many is improvement with PD medication.

Hikoi profile image
Hikoi in reply to Jenzo

Thanks Jenzo

Thats not fair, one condition is enough!

RoMo profile image
RoMo in reply to Jenzo

I don't agree. I have had ET for 35 years. My Dad had Parkinson's for about 14 years. They are very different.

Hikoi profile image
Hikoi in reply to RoMo

Romo im not sure what you dont agree with but i do agree with you when you say the two conditions are different. One poster here who travels the world giving lectures about PD has an essential tremor which he said doesnt occur without PD. That of course is not true, there is so much misinformation out there. i think people need to be more questioning.

Id be interested in comments from your very personal experience.

jrg54321 profile image
jrg54321

Does a dat scan tell the difference? I have a tremor while moving (action tremor), but I also have stiffness. I have had two dat scans and seen three movement specialists, and they have all said it's pd.

Hikoi profile image
Hikoi in reply to jrg54321

Yes, a Dat scan is used to confirm PD. and particularly if it is unclear if it is PD or ET.

So with your tremor it is never evident when you are sitting quietly and only comes on when you do something, eg tie your shoe laces or brush your hair?

jrg54321 profile image
jrg54321

It's mostly apparent for example when I am moving a glass to my mouth to drink with my right hand. If I get really cold and am standing still I do get some involuntary finger movement on my right side. I am 42 and was diagnosed a year ago.

Hikoi profile image
Hikoi in reply to jrg54321

I suspect you have a resting tremor, and yes it can also shake as you say, thats why it can be difficult to diagnose accurately.

Often it is a tremor in one hand for no obvious reason that takes us tothe doctor in the first instance.

ronn profile image
ronn

I grew up on a farm in Central USA, a long time ago. Life was simpler there and then. Very few people knew much about the difference between Parkinson''s Disease and Essential Tremor but were very familiar with folks afflicted with ST. VITUS DANCE, a term stolen from a similar disease.(Sydenham's Chorea). Back then I believed that PD was inherited since my father and I all shared the same symptoms. We also shared a common experience after the chemical FORMALDEHYDE came into use for treating seed to be used for planting crops. The treating process involved soaking the seed with the liquid poison before planting,,shoveling it into a transport vehicle or, in the event of rain delay, into a grainery for temporary storage. Much of this work involved standing up to the ankles in poison soaked grain, throwing it with a "scoopshovel" from one container to another. Men spelled each other at this work to minimise nausea. Uncle John, my dad and I all participated in this. I believe that, over four generations, formaldehyde provided symptoms of its own. To add to the problem some farmers saved money by mixing in excess seed grain (treated) with the grain they took to market for the eventual use for food.. The grain buyers responded by implementing a test for the presence of foreign matter to keep the practice within "acceptable limits". Formaldehyde has been the subject of several studies. One such study involved a display of ten human skulls depicting various degrees of damage caused by various factors.. The skulls were preserved in (guess what), FORMALDEHYDE.

Hikoi profile image
Hikoi in reply to ronn

I remember only once seeing a person with st vitus dance, a young girl who had rheumatic fever, not so common now.

Ronn, back then you believed PD was inherited... and im curious, do you still?

ronn profile image
ronn in reply to Hikoi

Hikoi, Before going further, I must apologise for my response to the questions in your post. I was tired and fighting my ancient desktop, should not have submitted it as written. First, in regard to your reference to the girl with rheumatic fever, I obviously failed to properly "set the stage". Let's set the year at 1939, the location a small town in North Dakota , USA. Two farmers are talking when a stranger walks by, shuffling his feet and trembling noticeably. One farmer leans toward the other.and says "That guy's got the Saint Vitus Dance". Now, neither of these farmers knew anything about PD or ET or Sydenham's Chorea, but St. Vitus Dance was a term used broadly to describe anyone who shook. ..Neither doctor n or patient had access to a fraction of the medical information which now makes us all."Experts".,, As to my belief that PD was hereditary, it was based on conclusions drawn from the facts I had. witnessed. My Paternal grandfather and his wife had 6 children, 4 boys and 2 girls. My Uncle John, the eldest, ran the farm from youth until he became ill. He was too stubborn to see a doctor, but moved to a house about 15 miles away where he lived as a recluse. A visitor would usually find him in bed, day or night. One day he was found dead in his yard, cause of death unknown. My father took over the farm and we shared the toxic shoveling of the grain for several years. He died in 1970, Then, when I was diagnosed with PD, a comparison of characteristics convinced us that we all had similar symptoms. It then became clear that our PD was not hereditary but was probably the result of several generations of exposure to a very caustic chemical.

Hikoi profile image
Hikoi

From the Mayo Clinic site:

Essential tremor is a nervous system (neurological) disorder that causes involuntary and rhythmic shaking. It can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you do simple tasks, such as drinking from a glass or tying shoelaces.

It's usually not a dangerous condition, but essential tremor typically worsens over time and can be severe in some people. Other conditions don't cause essential tremor, although it's sometimes confused with Parkinson's disease.

aspergerian profile image
aspergerian

A website with interesting anecdotes about ET and nutrients:

earthclinic.com/mobile/cure...

Hikoi profile image
Hikoi

Another reference

tremorjournal.org/index.php...

Full article:

tremorjournal.org/index.php...

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